All tagged Advocacy

Indomitably becoming

Indomitably becoming

Kelly Cervantes

With epilepsy awareness month coming to a close and infantile spasms awareness week upon us I’ve been thinking a lot about my advocacy. Specifically about the nagging guilt I’ve felt for not posting as much about epilepsy awareness as I typically would this time of year. Am I failing this community by not Tik-Toking and Insta-reeling with the best of them? Then, as if he could sense my musings from 3,000 miles away, Bud aka Emma’s dad, sent me a piece of his writing that cleared the muddled lines like a doctor decoding an EEG.

Under his eye

Under his eye

Kelly Cervantes

Never, in my nastiest nightmares, did I ever think I would have to make the decision to let my child die - let alone twice. But I have: Adelaide was my beautiful ladybug that passed away outside of my body days before her fourth birthday and Elvis was my little gummy bear that I carried inside me for 20 weeks. After Elvis died I felt compelled to advocate for women receiving abortions further into their pregnancy because I truly believe they are misunderstood. As of this week, however, I guess we have to advocate for abortion as a human right in itself.

First days

First days

Kelly Cervantes

Jackson doesn’t go back to school for three more weeks, but everyone’s back to school photos have me feeling alllll my feelings. You see, Adelaide should be starting kindergarten this fall. There will be a lot of these should’s to come. But this one is hitting me surprisingly hard for so many reasons. Not least of which is the stress I know medically-complex families are enduring as they make life or death decisions about how to protect their children in a world that has politicized masks and vaccinations.

Forced retirement

Forced retirement

Kelly Cervantes

“Did you fast before coming in today?” The phlebotomist asked.

“No, but I’m not getting a CMP so it should be fine.”

I felt a small rush as words came out of my mouth that I hadn’t uttered in over a year.

Learning this language and using it to care for and advocate for Adelaide, was one of my favorite parts of my job - and then I was forced into retirement.

Bold and benevolent

Bold and benevolent

Kelly Cervantes

I came across Nikki McIntosh’s Instagram page and was immediately drawn to her story, compassion and advice. Her son, Miles, was diagnosed with SMA (spinal muscular atrophy) when he was 18-months-old. Since then she has made it her mission to share everything she has learned with those that are newly diagnosed, searching for a diagnosis, or perhaps are jaded by the entire medical system and could use a mindful reset. So much of what we learn while parenting a child with disabilities can be applied to typical life as well. Nikki’s practice of being “bold and benevolent” is the perfect example — but enough from me, how about I let Nikki explain it to you…

Preserving our purple

Preserving our purple

Kelly Cervantes

It’s Purple Day! You know the Cervantes family loves an excuse to spread some epilepsy awareness. I LOVE this community. I LOVE the people it has brought into my life, the lessons they have taught us and the empathy and understanding with which we support one another. But lately I’ve also had a sense of desperation as these awareness days come and go and our connection to them is no longer pictured with us.

Parent of a child with disabilities

Parent of a child with disabilities

Kelly Cervantes

Lately, I have felt very reactive, owning my inherent biases only once atrocities against a marginalized community are widely publicized. But I aiming to grow and be more proactive starting with a marginalized community that is incredibly close to me but that I cannot claim to be a part of: the disability community. As parents of children with disabilities we take up precious space: We are fierce advocates and our disabled children’s voice, but we are often not ourselves disabled. This means we do not get to drive this discussion. It is important for us to sit back and listen to the community and follow their lead - this doesn’t mean advocating less or even more quietly, it just means listening first because our advocacy isn’t about us.

For all the bugs

For all the bugs

Kelly Cervantes

For the last couple years I’ve included my speech from this event as a blog post and even though more people were able to view it live this year than in the past, I believe there is still value in recording it here. Every word of this appeal is true and written from my heart. Thank you for reading and thank you for your support.

Everyday we're hustlin'

Everyday we're hustlin'

Kelly Cervantes

Tomorrow is Rare Disease Day and among the many (many) awareness days throughout the year, this has always been one of my favorites. This week I was reminded why: the rare disease community includes some of the most dedicated, supportive and hardest working hustlers you will EVER meet. From patients to caregivers to clinicians- alone we are rare but together we are strong AF.

Make my (awareness) day

Make my (awareness) day

Kelly Cervantes

This week I started to see reminders in my inbox and social media feeds that International Epilepsy Awareness Day was just around the corner, February 10th. I felt overwhelmed by the need to do something and underwhelmed by my desire to advocate. An Eeyore cloud settled over me and then, for the first time since Adelaide died, I felt anger. I’ve been waiting, even wanting the anger to surface. Then, there it was, grinning back at me like Jack Nicholson in The Shining. All purpose, no BS.

Dear Adelaide,

Dear Adelaide,

Kelly Cervantes

This week’s blog post was difficult to write, harder to put out into the world and maybe even harder yet for some to read. Your love and support has lifted us up and will continue to in the days ahead. Thank you…

The ‘H’ word

The ‘H’ word

Kelly Cervantes

The Cervantes family has had quite a week with something for everyone to celebrate - and we absolutely have. But lurking in the shadows of every celebration is chronic illness just waiting to take back the spotlight - and it has. I don’t use the word “hate” lightly. In fact, there is only one thing Jackson is allowed to say that he hates: epilepsy. But for some reason, using this word has been considered taboo in the community for years. So, I tried to figure out why.

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